What experiences do we share, and what barriers confront us? Is it possible to replace our contemporary, medicalized culture with something more representative of us as complete beings? Are we ready for a real sense of community yet?
I think so.

March 28, 2009

In 1959, Mother took me to St. Luke’s Hospital to have my epilepsy tested. We arrived in the morning, sat together for three hours, and then followed a Nursing Sister along a complicated set of corridors and wrought iron and marble staircases.We descended. Deeper and deeper into the bowels of the hospital we walked, until, at the end of the tour, we came to a cramped little space marked “E.E.G. Lab”.

The technician and my mother seemed to get on well. They chatted for a long while. Finally, the technician began a longer process of gluing electrodes to my scalp. It was not unlike getting a Toni, the home permanent for little girls.At the end of this very long process, I was exhausted and my nerves were running high. I had a pain about the size of an apple in the middle of my stomach and I wasn’t sure what came next.

Next, the technician had me lie on a cot and she told me to close my eyes and see if I could fall asleep. She quit talking with my mother, and suddenly everything was quiet. I began to drift off and finally went to sleep.The technician waved something under my nose to wake me.

Apparently, I had drifted very deeply asleep and she wanted me back, awake, in a hurry.

The smell went straight to my brain and did the trick.

Next, she lowered a lamp over my head and told me to stare directly into the center of the bulb, without blinking or closing my eyes. When she turned it on, it began to strobe slowly. She made a second adjustment to the lamp and it picked up the pace of the strobing considerably. I thought my head was going to cave in, until she said I could shut and cover my eyes.She adjusted the lamp back to its most comfortable setting, and then she directed that I should pant like a dog and watch the light. I was supposed to pant for three minutes, looking into the light all the while.

About 20 seconds into the panting, I tried to stop. The technician told me that if I stopped, she would tell my mother that I could no longer watch television, as a consequence.

After the panting-like-a-dog sequence was finished, she asked me to lie quietly. She took the lamp away, and darkened the room. Some time passed, and we were finished. She took the electrodes out of my hair and she warned my mother not to try to use a brush on it because it would need to be washed out with a special shampoo. She gave my mother the shampoo and we left.

I thought we were done for the day, but no. Mother had a surprise for me : a blood test.We walked down one more flight of stairs into a laboratory. A nun in full habit greeted us. She slipped into a smallish apron and sleeves and tied a rubber hose around my arm. Mother slipped away. I felt awful. Just as the nun slipped the needle into my arm, I vomited all over her. Then I seized.

When we finally arrived home that night, Mother told me she would never do that again, and I made the same promise back to her.

I pray for the soul of that nun often. I have insisted to God that it just slipped out.To date, God has never brought it up, but I think extra time has been added to my stay in Purgatory for Defacing a Habited Nun.

March 2, 2009

Since coming out as epileptic, I cannot count the numbers of persons who have come to me quietly to say they "used to have epilepsy" but that they "grew out of it"...

This is a kind of self identification that hedges one's bets, don't you think? Most of us know that if epilepsy comes into your life, epilepsy will remain in your life. Sure, it can remit... you can go for really long periods without it, but quite often, it will return with a vengeance.

Those of you who feel you have either overcome E. or that you have outgrown it still need to see a doctor once in awhile. You need to keep an eye out for it's return... At last report, there has been no cure for epilepsy presented. Even surgery only promises minimal results for some people.

Stop taking half-way measures! Stop shoving epilepsy to the back of your consciousness. E. can be dangerous, particularly if it catches you off guard. Be smart, be safe---go all the way out of the closet and admit having epilepsy.

You don't have to lie, you can let folks know that your E. has gone into remission and that you are not having seizures presently. It is probably a really good thing to let others know that this happens to us, that we are sometimes free of seizures for long periods of time. Some of us are even able to go off our meds when that happens. But, we are never free of E., neither are we cured of it... we must always use our awareness to see if it is coming back.

If it seems like it is coming back, we need our docs and our meds all over again, until the next remission.

One in one hundred people have E. and they need to hear from the rest of us that it is OK to say so. They need to know that there are others of us talking about it, writing about it, etc. and that we can offer advice and let them know they are not alone with this disorder.

So, stop telling others you "used to have epilepsy"--- wake up to the notion that you still have epilepsy! You are not cured of E.--- but you may well be in remission from it!

March 1, 2009

I have been doing E. since I was 3 years old. I have been taking medications for at least that long. The auras, the convulsions, the unsteadiness, the memory problems, the weird dreams or no dreams, the chewed up mouth and tongue, the incontinence, have all left me wanting out.

Then, when it remits, and I don’t have seizures for a long stretch, I think “Oh good! It’s finally gone!”… Well, not really, because it comes roaring back. And during the time it is in remission, I begin to anticipate it’s return.

I have to say, I hate all of it! I have had enough of it!

But, so what! It is with me for the rest of my life. So, I work on it, I work on the feelings I have about it. I try my best to settle down and realize that I could be much worse off…

I hear and read comments from others, on other blogs, in other chat rooms, folks with E. who are fed up and want to take some decisive action to convince themselves they are don with E. and everything about it. I hear folks say they are just gonna quit their meds. Or, that they are gonna quit seeing the docs. Believe me, I really understand this, but, unfortunately

This is not the way it works.

The consequences to stopping meds can be a return of seizures. If you stop seeing the docs, you will lose the continuity of care they provide you.

Try something new: see a psychologist that deals with disability adjustment or behavior. This might be helpful. You will have to be prepared to teach the doc all you know about your condition, because they are not well schooled in our disorder, but it can help. They can help you get past the fear and despair perhaps.

In the end, each of us knows we have to deal with E. We cannot escape it once we have it. But, we can work against it the best ways we know how.